About Us

The Food and Drug Administration (FDA) has invited people living with narcolepsy to share their experiences as part of the agency’s Patient-Focused Drug Development Initiative. Narcolepsy is the first rare disease and the fourth disease overall to be featured in this series of 20 patient-centered workshops.

Organizations and individuals across the narcolepsy community are joining efforts to make the most of this landmark opportunity. Unite Narcolepsy is an education and empowerment initiative created to help inform people affected by narcolepsy about the FDA’s invitation and to prepare them to respond meaningfully to it. By encouraging and equipping broad participation, we aim to honor patients’ experiences and use the power of their testimony to ensure that patient needs are at the center of research efforts and regulatory decisions about narcolepsy treatment.

Together we’ll increase awareness and deepen understanding about what it’s like to live with narcolepsy. Together we’ll accelerate better care. Together we’ll create a better future for all those affected by narcolepsy.